Biogen's new MS drug shines in market debut
 

My muscle strand spasms (few inches long, half inch wide) have worsened going from Ty to Tec.
Next month i'll check white cell count & if they didn't go down, i'm going back on Ty.

I know this is a "positive" thread, but sure haven't heard too
many positives about TEC?:grouphug:

Yep. Had high hopes for this. I'd do Novantrone but I know uti's will be terrible.
Tysabri's a great med, would've liked a half dose of Tec w/Ty. Could'nt.

I was told by my neuro that blood work was necessary once a year. Anything more was at the dr discretion. My dr is doing the bloodwork at 1 mth, 3 mth, 6 mth and then a year. If my white blood counts are fine / stable, then he'd switch to once a year after the first year. He wants to monitor my WCB and be sure it doesn't decrease too much.

I was taking TEC for 25 days and had some adverse reaction and had to stop. During that time, I followed a facebook group taking TEC and there were over 900 people chatting about their experiences.

There is a 40% chance you will have some side effects with this drug and some can be challenging (like diarrhea). I noticed while reading the facebook chatter that it really looked as though 40% was about right. The other 60% felt fine and had high hopes! For those taking shots, it is a big relief to take a pill! But like I said, the 40% with the side effects ranged from mild to moderate and were quite challenged by it! Especially the diarrhea! I had hardly any side effects!!!!! But I ended up with some pretty intense head pressure and headache that just got worse and worse. Neuro said I would not be able to take it. :( To all the others.......I wish them the best of luck!

Bless your hearts, you guys who take your chances, with
some of these dangerous drugs.:eek::hug: I don't have the
gutts anymore.:eek:

Ok, so I don't know if I have done this correctly, and I can't speak as to the provenance of the information, but perhaps it is worth checking out.....I don't know, and if I am totally wrong, that is fantastic and please don't shoot the messenger....

This if a forum post I have found about tecfidera:

http://www.drugs.com/answers/tecfidera-bg12-tysabri-713171.html

"I am also dealing with MS. I was asked to consider using Tysabri© nearly 2 years ago because I have such bad reactions to interferons. As I researched it, I became concerned over the history behind it regarding PML. I had my family research it before making the decision whether or not to risk PML. They all asked me not to do it! I called it the "Poison Dart Frog Serum".
As for the amount of time you should wait after recieving Tysabri©, you should ask your neurologist. No MS drugs have immediate "feel better effects." They do however, help you lessen the number of exacerbation periods. Their length and intensity can be eased as well.


Expand this post...


As for Tecfidera©... My one concern is the price tag of nearly $55,000.00 per year! I just began treatment on Tecfidera© with the understanding that it was relatively safe. I believe it is. However, a German Doctor, Dr. Jorg Shultz a neurologist at the research university in Aachen, Germany, was treating patients with psoriasis using Fumaderm©. It contains the same ingredient used for Tecfidera©, fumaric acid. One of his patients came down with PML.
He stated after Tysabri© and Tecfidera© are broken down in the body, they become essentially the same product! All of these products Fumaderm©, Tysabri©, and Tecfidera are manufactured by Biogen©! Are you surprised?
Read the article titled; "Ingredient In New MS Drug Linked To Brain Disease"
here in Drugs.com then you decide. I don't intend on taking Tecfidera© for more than 2 years in order to minimize the risk factor.
Discuss all your findings with your family. I hope this long answer helps you make a decision. May God bless you. "

http://www.drugs.com/answers/tecfide...ri-713171.html

See what you think, decide what you may.... it is all a 'crap shoot' anyway. We all do what we need to do to get through.

My Neuro wants me to try Tecfidera. He says it's safe. But then I read something like this and I'm back to feeling apprehensive about it.

It's like Lynn said.....it's all a crap-shoot. Everyone's body chemistry is different so everyone will react differently to the drug.

I'm just not ready to roll the dice yet.

Good Lord!!! Please use your common sense and be careful
out there.:grouphug:

I still think Tecfidera will be a welcome new drug for some people. I have 2 pharmacist friends who really like the drug and are happy it has hit the market.

Remember the PML was in 1 or 2 cases over a 30 year span treating psoriasis. Tasabri is very much liked by many MSers, but it has a risk with it also.

For those who can not take the interferons, this may be their answer.
I felt much more energetic while on the Tecfidera and shortly after stopping it. Now I am feeling a bit crappy again and will be starting Avonex tomorrow. I still believe the Tecfidera perked me up a bit.

All these drugs are scary because it is a crap shoot as stated. Its a very personal decision between the patient and doctor on what to try.
I did fine on the interferon for 11 years but was very sick and tired of the shots and my skin was so sore all the time. So I tried the Tecfidera and I think if they would titrate it up more slowly, maybe I could have tolerated it. Not sure....will never know....but I'm glad I gave it a go.
I guess only time will tell how the general MS population really does on the Tecfidera.
For me personally, I am not ready to dismiss the medication. All medication carry risks. You have to be your own advacate.

Wish me luck with the Avonex!

I'm stepping in here to say....yes it is your final choice to take or
not to take these scarry poisonous drugs. But I can't help thinking
that they are given and prescribed, in a willy nilly manner, giving
no thought to type of MS you may have, your size, your weight,
your DNA, family history....or anything.:mad:

They prescribe the same amount for a 5'2" 120 lb woman as they
do for a 6'5" 220 lb man. Oh yeah, some are just now realizing,
how WRONG that is. But do they stop and sort it out...Noooo,
because that would interrupt their profit.:mad:

Just saying again, use your own sense of well being,
not someone else's.:grouphug:

Not working for me
 

I really wanted this to work for me.

It took so much work to get: The delays getting to market, the fights with the insurance company, the astronomical cost.

At first the side effects were rough, but my body got used to it and now I mostly just get hot and flush a bit, no big deal.

Except - weight gain! Is anybody else gaining weight???

But sadly, it's not helping, and I think it is hurting. I have been getting more exacerbations than usual, but didn't want to believe it was from the Tecfidera. Unfortunately, I am now experiencing one of the scariest flare-ups I have had in a long time.

Anybody else experiencing this?

Guess I will have to stop. :(
I really, really wanted this to help and it seems I have wasted thousands of dollars just to get sicker.

I'm sorry it didn't work for you, Goldie. :( Seems like more and more folks are coming forward with issues from it.

I just want something that works without me having to take umpteen other meds to counteract the symptoms from it. :rolleyes:

I'm thinking I want (and need) to go back on LDN. The only reason I quit was that I had surgery and had to go off of it prior to and during the surgery. Time to call Dr. S again.

New Oral MS Drug Tecfidera Approved by TGA
 

Looks like it's been approved in Australia.

http://www.msra.org.au/new-oral-ms-drug-approved-tga

Has anyone heard from Eddie? He must be pretty discouraged by now.
Darn poison MS Meds..:mad:

Two and a half months for me, no problems. Not what I call problems, anyway. Yesterday, after two beers, I got the flushing effect. Suddenly felt like sunburn and turned red, even my arms. It went away quickly. And I recently read someone describe how their leg(s?) would unexpectedly weaken. Mine do that with a twinge of pain, but I cannot remember if it started before Tecfidera or after.

Starting my 2nd month and no problems so far. I always make sure I have ibuprofen before or with and take it with a glass of milk. I do feel like my Ampyra isn't as effective but that could just be this darn HOT temps. I sure don't miss the shots.

I've been away a while as well (not on anything currently - just my regular Nabilone and Clonazepam for pains). I'm wondering too how Eddie's doing. Thank you all for your feedback on this medication. I came here to update myself on the world of pharmas and drugs, so it's nice to see and read first-hand accounts of medications, side effects, positive benefits.

Hope everyone's doing well! :grouphug:

Howdy Laura. Nice to hear from you..:)

I feel really good on Tecfidera
 

I had to re-start the high dose after experiencing the bad side effects. But the second go around I made a lot of changes to my diet, took only 1 240mg pill a day until I felt "good" again, and aggressively treated every side effect.

When I added the second pill at night, I went back to the changed diet, aggressively treating every side effect, etc., and within three days, I felt good again.

The only side effects I feel now is a light "sun burn" feeling on my legs from time to time, and a little heartburn (nothing like the fire in my digestive system the first go around!).

I had been going downhill rapidly before I started Tecfidera. I've now been on the full dose for a month and I feel better than I've felt in years. I hope it's the drug and not a coincidence! I would think I would have to be on the drug for a year at least to know if I really am stabilized, or maybe getting better (I know that's a dream, but I can hope, right?)

Has anyone else out there felt better on the drug? Has anyone else seen improvement while on the drug?

Yes! I've been calling it "flushing" because I really do turn red but it also feels like a sudden sunburn (mine is on face and arms/shoulders). Thank you for mentioning that.

Glad you are feeling good on the med. I cannot say I feel better on it, because I never felt bad before.

jfcincy56

I think we will find in the near future that the dosing schedule needs to go slower for this drug. Most people are fine until they hit the full dose. I think they start the full dose a little too soon. So happy you are tolerating TEC! I pray you see real results soon :hug:

Howdy Partners!
 

Between installing new cpu, ram, ssd harddrive & reinstalling Windows, I didn't make NeuroT a fav & email notifications from NeuroT didn't come in anyway here I am!

Tecfidera- been taking it 4 months now.
I never have stomach issues,
Mild flushing (if it was even flushing- was hot at night sometimes) lasted maybe a month or 2 but absolutely no problem,
Muscle loss or strength compared to Tysabri's about the same.
Spasms were always severe when I move after sitting still for 1/2hr or so, I can't say they've worsened much on Tecfidera.
Spasms/sudden sharp strong jolts after lying in bed for an hr watching tv at bedtime or making up med supplies possibly reduced - let me explain...
After 3rd week of Tysabri infuse, i'd get the jolts in bed often till my next infuse. Ty worked excellent for 3 weeks, wish infuse was every 3 weeks.
Tecfidera- i'll say the jolts i'm speaking of are slightly less frequent & more consistant since Tec is taken daily.
I have 65 more laps to go in my 28' long pool for a 2013 total of 3,000
Swam 2,100 last yr & yr before as well on Tysabri.
Same muscle strength Tec vs Ty, I just wanted to reach 3,000 this yr and pushed harder.
I take 140mg's of baclofen/day plus 20 other meds & vitamins combined.
Eyesight- maybe it's a bit worse over the past 4 months? Haven't taken medrol either in 6+ months which seemed to help eyes. I forget to ask for script cause neuro appt is short & too quick even for me. I'm fine w/o it though or i'd get it.
Yes I took medrol dose pack maybe 4 times on Ty and all it did was help not hurt but that's me.
WBC- for 1st time in 5 yrs it's FINALLY going down. 11 it's at now from 15, 16, 17 which is thru the roof for past few yrs.
Yes the Tec lowers white cells BUT- after 1st month they actually went up a point which ****** me off heh.
I'm staying on Tec for a couple more months, then i'll decide if I want Ty back. So far so good.

Lunch break over.

Eddie- We were worried about you. Thanks for reporting in and being specific.

ANN

So, I went to see my neuro on Monday. He didn't push the CRABs, nor Tysabri. He did give me documentation/printed material about Tecfidera. :cool:

He didn't write me a script, which I very much appreciated. He "gets" me, although I don't think he'll ever come straight out and admit so.

In any case, he wants me to read about Tec, and see if it's something that I'd feel comfortable taking (!). He did take my blood pressure, it was 110 over 70 (excuse me if these # are different than those in the USA, or else... I'm in Canada).

The last time he saw me, I was 80 over 50. I've always had quite low BP, so he was concerned about putting me on Tec because of this, but more so he's concerned about what Tec could do to me, as I have digestive (long term) problems.

I have the info from Biogen, now to decide if Tec is something I want to try. Everything we take, of course, has side effects. I may wait on this one and see how things go with my MS heading into Winter. If I'm stable, it may not be time (and I could wait a bit to see how others are doing on Tec).

I am curious to explore this option though, if the time to medicate comes for me. Yeah I can argue that the time is now, I am diagnosed for 5+ years with MS (probably had it for over a decade based on my neuro's findings). My hubby and parents are no so happy with the thought of any of the MS therapies. I have my own hesitations about taking these powerful meds. Perhaps some day though.... thanks for the information everyone has provided! :grouphug:

Day 3
 

After reading all the stories on the internet (I need to stop!) I was pretty worried about starting Tecfidera, but I am happy to report that I am tolerating the drug fairly well. First dose I had a little flushing in my arms and my wrists itched for about a half hour, but since then it's been fairly smooth sailing (slight nausea this morning).

I'll post again when I go to the double dose, but I just wanted to give some positive feedback for those considering this drug.

p.s. I have been taking a low dose aspirin and taking it with food.

Best of luck to everyone!

Hi Pete. I hope you continue to do well on TEC, with the dbl dose..:)

You might try
 

I switched to ARRP medicare RX plan d this year and it said it was covered for secondary progressive and I believe primary too. Good luck!

update on Tecfidera
 

How has the Tecfifera worked for you?

I went back on Tysabri
 

I will say Tecfidera is a great drug & excellent form compared to shots.
Side effects were nill after a month or so & Tecfidera surely works.
I wanted Tysabri back. My MS progresses on either but Ty has the edge.
If I has to pick between any of the injectables or a pill twice/day, i'd surely try the pill IF, shots weren't holding me/you steady.
For travelers, a pill's hard to beat.

Tec coming tomorrow...just a bit nervous.
 

Well my meds are due here tomorrow and as much as I am happy I don't have to do shots every day, I am a little nervous about the tec, but staying positive. I'm just a bit confused about the aspirin and antacids I have to take with it. Can someone tell me what has worked best for them? What brand of antacid of aspirin?
Thank you!

Tracy- I never took or heard of taking antacids for Tecfidera, was fine without.
One aspirin I take every night & have for a yr before Tec just for kicks to thin blood & sleep better.
One ibuprofen I take every morning for past few yrs.

I took the Tec with morning pills & milk, eve pill after dinner.

Well day number 6 and I am doing very well. I have only had one day of feeling extremely tired, but I have no thyroid so it could have been that. Starting the full dose on Tuesday so I am keeping my fingers crossing it's so wonderful not having to do those shots!

Just set up my first shipment of Tecfidera. I start it on 3/12. Ya'll keep your fingers crossed that this will be a good fit for me. :)

I hope it helps you and makes you feel better.:hug::hug::hug:

New to Tecfidera
 

Hi everyone,

I was Dx 6/2004. My Dr put me on Avonex, after 6-8 months he changed me to Rebif because I am a major needle phobe! I used Rebif for about 4-5 years and had to discontinue because of needle site reactions. He put me back on Avonex and I have used it until about 1 1/2 months ago. I finally hit a major level of needle fatigue. My current doc prescribed Tecfidera and I started on it on Feb. 23. The 1st week and a half were very uneventful, maybe a but of flushing. The last few days I am having quite a bit of stomach cramping and mild headaches. I also have noticed more fatigue than is typical for me, but I am also dealing with a number of stressors! I plan to battle through it until the dr orders blood work. As long as that comes back ok I plan to stay on this path.

Good luck today (Wed) Kelly, on your start with TEC...
Praying for the best for you.:hug:

Well, I just woke up with fever, cramping and body aches. Will call Dr as soon as they open. I have a feeling I am going to be taken off of Tecfidera. Sorry, I know this is not positive but figured people might want to know these things.

Like all other meds, it doesn't work for everyone. So sorry it's not working for you.:hug: